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Please can someone help me

I don't know who to turn to any more. I am 27 year old female. 6 months ago I developed an "unknown heart problem" I was in ICU but the dr's cannot find anything physically wrong with my heart (did eco/angiogram) - I am not on med aid and they said they would schedule me for an MRI but that never happened.

They said that I have unsustained ventricular fibrillation and tachycardia. Amongst other things sometimes my heart aches and other times I get a piercing pain in my heart.

My heart will be fine for a while and then it will just randomely start going crazy. (And by crazy, I mean CRAZY) I find that if I exercise or exert myself, it starts going bad (also when I am stressed). (when I went for a follow-up appointment the ECG was normal - the dr said I was "fine" - I said "no, I am not. let me walk up and down the stairs" . The woman who did the ecg once I had done that was shocked and the dr had to consult with all the other drs and the head of the hosp. Please.. if someone is interested in helping me, I will get copies and send it to you...) I am on Beta-Blockers but the doctors can't give me any answers. Will I have to live like this for the rest of my life??

I did use cocaine when I was younger but not at the time that this all started. And not since.

The day it started I was struggling to sleep that night and kept on waking up to urinate. But I was urinating a huge amount. The next morning my kidneys/back started aching and I started feeling really strange so went to the clinic. And ended up in ICU. Dr's dont seem to think this has any relevance, but I don't see why not.. It was all quite strange. Then I had bad palpitations/pains two days ago again, once again with the aching back/kidneys and almost felt like period pains and headache. Not frequent urination, though. Do you think this might be related? Or perhaps I was just sick and that caused the heart to go out of whack in this instance. I do have the palpitations/pains without the backache too, though..

I want to live a normal life with my daughter. I don't know what to do anymore. I am so afraid of dying and it is so scary when this happens.

I don't injest any caffeine or smoke.

Please can anyone help me.
9 Responses
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Avatar universal
Hopefully your doctors have explained what is going on -   you may
want to read an informative article discussing ARVC/D http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2222049/

Helpful - 0
967168 tn?1477584489
are they going to implant an ICD?
Helpful - 0
Avatar universal
Just to give you all feedback - After many months and many tests I have been diagnosed with a heart disease called "ARVC / D".

Bye for now!
Helpful - 0
Avatar universal
Thank you all so much for your comments. You are bringing tears to my eyes - to have taken the time to give me advise. - I really really appreciate it. The drs , who are specialists at the Cardiac Unit, did do the test to check if my body is lacking anything. Lots of blood tests.

I will phone around and tackle this again. Thanks once again everyone. x
Helpful - 0
1347434 tn?1282591778
Ack!

I'd take this one step further actually...

If you truly have a documented case of Non-sustained V-Fib and V-tach - I can't even believe the doctors and head of hospital let you leave without implanting an ICD or sending you onto more accomplished, knowledgeable doctors.  We're not just talking bouts of A-fib or a few PVC's - what you are describing is deadly serious and I don't know if I'd be too comfortable taking a wait and see approach.

If they've documented this, then is there really a reason to sit around with a holter monitor on?  They've seen it or you wouldn't have had this diagnosis.  Your next stop NEEDS to be at an EP doctor and I really hope they can get you in for an EP study - like yesterday.

I can't imagine that they wouldn't have done the MRI, these two conditions are the "big bad ones" of arrhythmias.  The two that everyone is always worried about, but usually doesn't have.  You do.  This needs to be addressed immediately.  Yes, your echo is good but that's only a grainy 2-D image, sometimes not even showing characteristics of disease processes that can cause what you have like ARVD for example.

If exercise is triggering this, then you'd kind of imagine that someone running a hospital might have considered running a stress test on you.  If a team of doctors consulted on your case and took it nowhere, the hospital is failing you.  

Echocardiograms and ECG's aren't the gold standard in diagnosing structural problems with the heart that could be contributing to your rhythm issues.  

I'd push for a cardiac MRI, stress test, EP study and possibly even testing for the rare heart rhythm conditions like Brugada, ARVD, CPVT, etc.  What you are describing sounds way too dangerous to be left up to a Beta Blocker to treat and there HAS to be a doctor out there that can give you some answers.  

Oh, and you mention that this started due to an infection...

Could it have affected your heart in any way?  Do you have scarring that an echo missed (very possible).  Might you have another underlying condition  like Hyperthyroidism or an adrenal tumor?  I know these are all rare conditions, but what you're describing is very rare too - and very scary.

Get help!  Call every EP center in your area until someone can get you in.
Helpful - 0
1137980 tn?1281285446
First off the set you at ease when a heart starts beating erratically it has nothing to do with your past recreational usage w. the cocaine.  The heart beats as a pump for the body and it pumps by use of electrical activity and sometimes to put it in a basic way to you the electrical patterns may suddenly re route themselves and start firing off the wrong way.  Do not get me wrong here tho...you do not want to indulge in any use of a stimulant if you are having these problems because it could be deadly for you in a moment.  The heart tends to tach out or go thru atrial fib when you feel these things and if you enter into the pic a stimulant you can expect your heart will go off of the charts.  If the docs said that the structural integrity of your heart is fine...that all fine and good but they aren't going to see the misfiring of the electrical pattern by looking at it.  I agree with keepon189 the best way to start out with this is a holter monitor for at least 72 hours to see if they can catch the episodes.  And will you have it for your lifetime?  Not if you don't want to because this in most cases is treated easily thru and ablation as a cure not a treatment.  If it were my body i would drive them crazy with phone calls or plant my butt in their office until they told me how they are going to fix this...as you said its not just about you but you have a little girl that needs her mom.....take the bull by the horns my friend and make them listen to you...we only have one shot at this life and they don't know anything is wrong unless you tell the docs....good luck to you.....
Helpful - 0
Avatar universal
Hey treatums,

   I agree that if you have not had it done a 24 or 48 hour heart monitor might be in order. With all those tests, and I am in no way a medical professional, I believe it is HIGHLY unlikely you have anything life threatening going on. That said wahtever is going on is obviousley effecting you quality of life so I would push the doctors to find out what is going on with your heart. There are many arrthymia treatments available that are pretty effective so I believe it would be worth your time.
Helpful - 0
503607 tn?1275671579
Did they check your urine for a bladder infection?  If I get any infection my heart is always affected.  If you were urinating alot you may have depleted your potassium and other minerals and caused an imbalance causing your heart to go crazy. Taking any herbal diet pills are dangerous they are not monitored by the FDA, they can put anything in them.  If you are prone to heart issues stay clear of diet pills.  Have you worn a monitor to catch what is happening? If you have documents unsustained VT,  I would definetly suggest an EP consultation.  If all your heart tests are fine it seems like you have an electrical issue.   Good Luck!
Helpful - 0
Avatar universal
I did take a "100% herbal diet pill" called Simply Slim, which was causing similar effects in people.. Contained 27mg of Sibutramine per tablet which was not mentioned on the packet or in leaflet. Do you think this could be part of the cause? I hadnt taken any pills for probably a month prior to when this started, though.

http://www.thoughtleader.co.za/royjobson/2010/02/16/simply-slim-sibutramine-and-synephrine/
Helpful - 0
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